Referral: Medicaid, Fibro, EDS, PTSD...

[drusso]

30 year old female on disability with 3 kids: OXY/APAP 10/325 four QD, Mobic 15 mg, Lyrica 300 mg BID, OTC Aleve, & Seroquel QHS.

What's your next move...

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[101N]

Given that list of diagnoses, and the ordering of the Ddx I think you need to question all of the diagnoses and their order.
So what is the FSQ score? It's sensitivity is 96% and specificity is 92%. If the question is : Does this patient have FMS? That
is where you start.

If it is FMS then evidence-based recommendations include : patient education (setting realistic expectations),
exercise, behavioral therapies, and a variety of non-opioid medications. She's on opioids and it will be a battle
to get her off of them. Probably better to have the difficult conversation that opioids were not intended for chronic
use and tolerance is inevitable. When that occurs the solution isn't a dose escalation but rather an opioid holiday,
and document that. Moreover, when FMS is in the mix with a host of other CNP diagnoses IT is the primary source
of morbidity. So in this 30y/o that means that procedures for the hip pain, SIJP, and neck pain are off the table.

 

[DrCommonSense]

30 year old female on disability with 3 kids: OXY/APAP 10/325 four QD, Mobic 15 mg, Lyrica 300 mg BID, OTC Aleve, & Seroquel QHS.

What's your next move...

View attachment 215823

Treatment Plan should include:

A) Psych Assessment for Narcotic Usage to determine if she is stable enough to be able to use these higher risk medications
B) Urine Drug Scree and Medication Background Check for Physicians
C) Consider Sacroiliac Joint Injection if provocative tests are positive
D) Physical Therapy Assessment and Treatment
E) Consider further Xrays depending on PE findings

 

[BobBarker]

Stop Mobic. RX naproxen, no OTC NSAIDs. Topical of choice, aspercreme with lidocaine OTC if no RX coverage for topical. A thorough exam of knees, SI joints, hips and determine the likelihood of real issues here. If nothing besides touchy diffuse pain, present weaning of Percocet to off as only option. May start naltrexone after weaning. I guarantee she has already tried tramadol so I wouldn't bother.

 

[pmrmd]

#1,2,3,4,5: D/C oxycodone. This lady cannot be on that. Nucynta or nothing at all.
6. Doxepin or TCA of choice QHS
7. Cervical radiographs to assess for curvature/facet arthropathy as "cervicalgia" and "trigger points of the neck" reflect joint pain underneath and chronic joint pain leads to chronic muscle tension acting as a splint leading to the diagnosis of "Fibromyalgia", which does not exist.

 

[VA Hopeful Dr]

Stop Mobic. RX naproxen, no OTC NSAIDs. Topical of choice, aspercreme with lidocaine OTC if no RX coverage for topical. A thorough exam of knees, SI joints, hips and determine the likelihood of real issues here. If nothing besides touchy diffuse pain, present weaning of Percocet to off as only option. May start naltrexone after weaning. I guarantee she has already tried tramadol so I wouldn't bother.

What's the reasoning behind this?

 

[BobBarker]

She is probably overdoing the NSAIDs based on her adding aleve to rx mobic.

 

[DrCommonSense]

She is probably overdoing the NSAIDs based on her adding aleve to rx mobic.

lol

Im sure she is "allergic" to everything but narcotics in the future.

 

[SeniorWrangler]

1) Encouragement to go to community mental health for help with her PTSD which is surely making everything worse (unless she is already seeing somebody who is writing for the seroquel);
2) talk about exercise and diet since given her pain symptoms I suspect she is overweight;
3) taper percocet.

 

[neutro]

1) UDS prior to seeing the patient. Anything but expected shows up - discharge.
2) Referral to Cognitive Behavioral Therapy.
3) Share current opioid guideline literature and plainly state that you disagree with opioids she is being managed with.
4) Do NOT take over the responsibility to taper opioids yourself. Rather say, I recommend opioid reduction, 20-25% / week - month until off, and this will need to be done by your current provider. If they are not comfortable doing it themselves (99% of the time, because they are lazy and hence sent you the patient in the first place), you can give them a list of addiction medicine providers to help wean.
5) Follow up in 6 months for re-evaluation for possible interventional pain modalities. At this time, she is not a candidate.
6) Rheumatology consult to confirm FM and mgt and treatment.

 

[clubdeac]

Wow think how much taxpayer healthcare dollars she is wasting...now multiply that times 50 million... and voila you've got our enormous healthcare debt crisis

 

[lonelobo]

There is no diagnosis there indicating the need for Opioids

 

[DrCommonSense]

There is no diagnosis there indicating the need for Opioids

Fibromyalgia is a real diagnosis! Furthermore, nothing else with fix it except for OXYCONTIN or FENTANYL spray.

Don't you care about her pain?

 

[powermd]

How does she think she's doing?

Does she smile and say, "Wow, I'm doing great on all these meds!"?

What are her hopes and expectations for treatment?

 

[Hoya11]

30 year old female on disability with 3 kids: OXY/APAP 10/325 four QD, Mobic 15 mg, Lyrica 300 mg BID, OTC Aleve, & Seroquel QHS.

What's your next move...

View attachment 215823

You can formally recommend avoiding opiates and make it obvious in your note. Then never see her again

 

[Gauss]

1st world problems.... but then there's this: http://www.cnbc.com/2017/03/07/why-...snt-likely-to-set-cash-registers-ringing.html

 

[bedrock]

super easy for me. Opiods are for improved daily function. Anyone under medicare early retirement age of 62 who isn't working full-time doesn't get opioids, end of story, no exceptions unless you are a quad, or basically a quad from ALS, CVA, etc, a real disease, not her BS.

I will not facilitate anyone to leach off off all of our taxes. If they are trying to be a good citizen and support themselves, then I will take a closer look and consider all options.

 

[clubdeac]

super easy for me. Opiods are for improved daily function. Anyone under medicare early retirement age of 62 who isn't working full-time doesn't get opioids, end of story, no exceptions unless you are a quad, or basically a quad from ALS, CVA, etc, a real disease, not her BS.

I will not facilitate anyone to leach off off all of our taxes. If they are trying to be a good citizen and support themselves, then I will take a closer look and consider all options.

Playing devils advocate, but what about quality of life and ADLs? What if the patient can give objective evidence that opiates are improving his/her QOL and ADLs

 

[bedrock]

Playing devils advocate, but what about quality of life and ADLs? What if the patient can give objective evidence that opiates are improving his/her QOL and ADLs

I can just see the documentation of the ADLs from the disability patient.

1-Got out of bed by myself at 945AM
2-I can now play Xbox for 3 hours today by myself!
3-I can now get food from store via food stamps, house is now stocked with of cheetos, twinkies and big gulps
4-I can now get the bottle cap off my liquor bottles no problem
5-I was able to masturbate three times today without my elbow pain

"See doc, look at the improved function I achieve on Perocet!"



Seriously though, there is nothing bankrupting this country more these days than the fact 90% of the people on disability shouldn't be. Opioids are powerful and risky. If you've worked your full life up to at least early medicare retirement age (62), and need some help with ADLs fine. If you are of working age, and are trying to support yourself and or family and need help for ADLs, to work, etc, fine.

But I will never write opioids to someone I don't respect, who is a leach on our country and the tax system and is just wasting their life as I outlined above. I even tell these patients that the risk of opioids isn't worth it unless they are working full-time, so if they really need opioids, they can get a damn job (with documentation) and then come back from another visit.

 

[101N]

ASIPP wants to preserve this patient's right to injections. Such a noble cause, and so meaningful for her rehabilitation.

 

[drusso]

ASIPP wants to preserve this patient's right to injections. Such a noble cause, and so meaningful for her rehabilitation.

Since it's not a covered benefit, she'll just have to pay cash for pain management if she wants it.

 

[cowboydoc]

Not to encourage the cessation of beating a dead horse, but if the patient actually has Ehlers-Danlos, I'd be hard-pressed to diagnose fibro. Obtaining a family history and a fairly straightforward physical exam would give you a fair degree of confidence in knowing whether she had a type of EDS. If negative, proceed with the "we hate fibro" bandwagon. If there is a positive family history and hypermobility on exam, you have a truly challenging patient on your hands.

Dr. Brad Tinkle, MD, PhD wrote Joint Hypermobility Handbook, which I have found to be a decent resource. These patients often have diffuse pain related to hypermobility, commonly have nerve entrapments. Chronic fatigue is also common, so they're easily confused for fibro patients. I have ~10 patients that carry this diagnosis, about half of whom are not working outside the home, however none are on Medicaid to my recollection. I have found a high susceptibility to SI joint dysfunction and facet mediated pain. Core stabilization is incredibly difficult and a physical therapist that is not familiar with this type of patient can contribute significantly to the problem.

I have found genetic studies to be rather low yield, though I usually offer referral to genetics. I always encourage a transthoracic echo, because if they have a vascular sub-type they are susceptible to aortic root dilatation and possibly sudden death.

 

[DrCommonSense]

super easy for me. Opiods are for improved daily function. Anyone under medicare early retirement age of 62 who isn't working full-time doesn't get opioids, end of story, no exceptions unless you are a quad, or basically a quad from ALS, CVA, etc, a real disease, not her BS.

I will not facilitate anyone to leach off off all of our taxes. If they are trying to be a good citizen and support themselves, then I will take a closer look and consider all options.

Damn bro, you don't consider Fibromyalgia to be a real disease?

Daniel Claw at the University of Michigan has been a "consultant" for years for Pfizer and ASSURES everyone that this is a REAL disease.

Do you question the integrity of consultants for big pharma? What is the world coming to around here?

 

[DrCommonSense]

super easy for me. Opiods are for improved daily function. Anyone under medicare early retirement age of 62 who isn't working full-time doesn't get opioids, end of story, no exceptions unless you are a quad, or basically a quad from ALS, CVA, etc, a real disease, not her BS.

I will not facilitate anyone to leach off off all of our taxes. If they are trying to be a good citizen and support themselves, then I will take a closer look and consider all options.

So its ok to prescribe Lyrica at 700/month out of the taxpayer pocket though for "fibromyalgia" Im assuming?

Are we going to look at the "functional benefit" of this drug as well or just say F it because its not an opioid?

I mean dropping 10K/year in taxpayer money on Lyrica to obtain a .2% VAS improvement in pain with 20 different side effects from this drug for "Fibro" pain is definitely a great investment for society since its not really an opioid right?

 

[DrCommonSense]

ASIPP wants to preserve this patient's right to injections. Such a noble cause, and so meaningful for her rehabilitation.

Nah, I suggest putting her on Lyrica at 700/month to improve Pfizer's stock prices for her "Fibro" considering the beyond reproach honesty that your boy Daniel Claw has with ZERO financial ties to big pharma.

What a noble cause and meaningful rehabilitation methods by such a noble man! Dude should be elected as a saint!

http://www.nytimes.com/2008/01/14/health/14pain.html

Even the NYT is concerned with the integrity of Daniel Claw though but I assume its just doctor hating due to his impeccable morality and honest "studies"

"The F.D.A. reviewers who initially examined Pfizer’s application for Lyrica in 2004 for diabetic nerve pain found those results unimpressive, especially in comparison to Lyrica’s side effects. The reviewers recommended against approving the drug, citing its side effects.

In many patients, Lyrica causes weight gain and edema, or swelling, as well as dizziness and sleepiness. In 12-week trials, 9 percent of patients saw their weight rise more than 7 percent, and the weight gain appeared to continue over time. The potential for weight gain is a special concern because many fibromyalgia patients are already overweight: the average fibromyalgia patient in the 2007 survey reported weighing 180 pounds and standing 5 feet 4 inches.

Photo

Pfizer has started a television advertising campaign for the drug Lyrica, the first approved to treat fibromyalgia. CreditPfizer
But senior F.D.A. officials overruled the initial reviewers, noting that severe pain can be incapacitating. “While pregabalin does present a number of concerns related to its potential for toxicity, the overall risk-to-benefit ratio supports the approval of this product,” Dr. Bob Rappaport, the director of the F.D.A. division reviewing the drug, wrote in June 2004."

Wow thankfully Pfizer used its lobbying influence at the FDA to overrule the committee deciding if Lyrica is valuable.

What a noble group indeed!

http://www.cfah.org/hbns/2013/drugs-to-treat-fibromyalgia-just-as-likely-to-harm-as-help-

 

[bedrock]

So its ok to prescribe Lyrica at 700/month out of the taxpayer pocket though for "fibromyalgia" Im assuming?

Are we going to look at the "functional benefit" of this drug as well or just say F it because its not an opioid?

I mean dropping 10K/year in taxpayer money on Lyrica to obtain a .2% VAS improvement in pain with 20 different side effects from this drug for "Fibro" pain is definitely a great investment for society since its not really an opioid right?

I agree that lyria is way overprescribed. There are patients that definitely do better on it than gabapentin for neuropathic pain, but you should never start with lyrica (though the reps want you to), there are plenty of neuropathic meds other than those two, and I basically don't take fibro patients anyway.

 

[DrCommonSense]

I agree that lyria is way overprescribed. There are patients that definitely do better on it than gabapentin for neuropathic pain, but you should never start with lyrica (though the reps want you to), there are plenty of neuropathic meds other than those two, and I basically don't take fibro patients anyway.

Nah man its above reproach, the FDA committee overseeing it plus all the "meta-analysis"reviews are "wrong" apparently and Daniel Claw who incidentally is a consultant for Pfizer is above reproach and is a real humanitarian on this issue.

Fortunately, Pfizer's lobbyists were able to get the "senior" officials at the FDA to overrule its own physician committee on the subject!

http://www.cfah.org/hbns/2013/drugs-to-treat-fibromyalgia-just-as-likely-to-harm-as-help-

Consumer's Reports on the issue:

http://www.consumerreports.org/cro/...on-drugs-used-to-treat-fibromyalgia/index.htm

 

[Ducttape]

so, just to clarify...

in your mind, lyrica is not okay (and I cant disagree with you, given the cost). are serial SI injections, transforaminals, median branch blocks?

 

[SeniorWrangler]

There's a difference between saying, "this patient is not a good candidate for treatment X" and "this patient is a disaster." Could we as a group try to have more of the former and less of the latter, at least in the public forum?

 

[DrCommonSense]

so, just to clarify...

in your mind, lyrica is not okay (and I cant disagree with you, given the cost). are serial SI injections, transforaminals, median branch blocks?

Didn't say that either for fibro

 

[Kisforpotassium]

It's thought that about 1/2 the patients diagnosed with fibromyalgia actually have ehlers danlos syndrome instead, which is a multi-systemic collagen disorder. An eds diagnosis invalidates the fibro diagnosis, this patient doesn't have fibro if they have eds. Evaluate all suspected fibro patients with beighton scale and brighton criteria. EDS is one of the most painful conditions a patient can have, patients with it are on high doses of morphine so i'm glad this patient is managed with lower doses of opioids. Evaluate craniocervical instability using upright mri in flexion and extension and rotational ct for neck issues. Send for manual PT and provide custom fitted braces to restrict motion but instruct patient to not use them all the time. Do NOT perform steroid injections on an EDS patient unless it's for bursitis and dry needling has already been done. Steroids will degrade the little working connective tissue they have and make the problems worse in the long run. Also evaluate this patient for dysautonomia and mast cell disease, both present in over half of EDS patients. Treatment for these disorders will help overall pain and function. Sometimes merely increasing salt and fluids and adding zytrec and zantac 150 2x a day will reduce pain dramatically.
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31555/full Mast cells create a lot of inflammation and is a major cause of pain and dysfunction. Also autonomic dysfunction can cause pain to be exacerbated. POTS is the most common form of autonomic problem and a poor mans tilt test can be done in office for quick evaluation.

Shame on the people who don't want to help this woman because she isn't working, taking care of three children is work and you don't want to lower thier quality of life because their mother can't take care of them. Often patients with eds and mast cell disease do have a lot of allergies to meds. Asprin and other meds cause extreme issues in MCAS patients. Only some narcotics can be taken because of their histamine releasing properties. Dilaudid is the narcotic that releases the least amount of histamine so yes patients ask for it by name. These patients often have gastroparesis written off as anorexia, autonomic dysfunction written off as anxiety, allergic reactions written off as conversion disorders but there are great treatments that work for them and science to back up. I'm wondering how to overcome some of these obstacles when handling a patient off to another provider. How can I have other providers take these patients seriously? I usually forward articles about this diseases.The ehlers danlos society is about to put out a treatment guide march 15th..

 

[DrCommonSense]

About 1/2 the patients diagnosed with fibromyalgia actually have ehlers danlos syndrome instead, which is a multi-systemic collagen disorder. An eds diagnosis invalidates the fibro diagnosis, this patient doesn't have fibro if they have eds. Evaluate all suspected fibro patients with beighton scale and brighton criteria. EDS is one of the most painful conditions a patient can have, patients with it are on high doses of morphine so i'm glad this patient is managed with lower doses of opioids. Evaluate craniocervical instability using upright mri in flexion and extension and rotational ct for neck issues. Send for manual PT and provide custom fitted braces to restrict motion but instruct patient to not use them all the time. Do NOT perform steroid injections on an EDS patient unless it's for bursitis and dry needling has already been done. Steroids will degrade the little working connective tissue they have and make the problems worse in the long run. Also evaluate this patient for dysautonomia and mast cell disease, both present in over half of EDS patients. Treatment for these disorders will help overall pain and function. Sometimes merely increasing salt and fluids and adding zytrec and zantac 150 2x a day will reduce pain dramatically.
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31555/full Mast cells create a lot of inflammation and is a major cause of pain and dysfunction. Also autonomic dysfunction can cause pain to be exacerbated. POTS is the most common form of autonomic problem and a poor mans tilt test can be done in office for quick evaluation.

Shame on the people who don't want to help this woman because she isn't working, taking care of three children is work and you don't want to lower thier quality of life because their mother can't take care of them. Often patients with eds and mast cell disease do have a lot of allergies to meds. Asprin and other meds cause extreme issues in MCAS patients. Only some narcotics can be taken because of their histamine releasing properties. Dilaudid is the narcotic that releases the least amount of histamine so yes patients ask for it by name. These patients often have gastroparesis written off as anorexia, autonomic dysfunction written off as anxiety, allergic reactions written off as conversion disorders but there are great treatments that work for them and science to back up. I'm wondering how to overcome some of these obstacles when handling a patient off to another provider. How can I have other providers take these patients seriously? I usually forward articles about this diseases.The ehlers danlos society is about to put out a treatment guide march 15th..

That disease can be readily diagnosed by a Rheumatology colleague.

Ergo, that shouldn't be an issue.

 

[101N]

"About 1/2 the patients diagnosed with fibromyalgia actually have ehlers danlos syndrome instead, which is a multi-systemic collagen disorder. An eds diagnosis invalidates the fibro diagnosis, this patient doesn't have fibro if they have eds."

That's a bunch of nonsense.

 

[DrCommonSense]

"About 1/2 the patients diagnosed with fibromyalgia actually have ehlers danlos syndrome instead, which is a multi-systemic collagen disorder. An eds diagnosis invalidates the fibro diagnosis, this patient doesn't have fibro if they have eds."

That's a bunch of nonsense.

Wow even a broken clock is right twice a day!

 

[Medame]

"About 1/2 the patients diagnosed with fibromyalgia actually have ehlers danlos syndrome instead, which is a multi-systemic collagen disorder. An eds diagnosis invalidates the fibro diagnosis, this patient doesn't have fibro if they have eds."

That's a bunch of nonsense.

Agree and disagree. Though it is clear that EDS is much more prevalent than previously assumed, I'm not aware of any studies indicating that 50/50 percentage. Furthermore, fairly certain it is possible to have both. After all, plenty of EDS patients do *not* have fibro; hence though it may sometimes--or even frequently--be *secondary* to EDS, it shouldn't be written off as nonexistent.

 

[Medame]

That disease can be readily diagnosed by a Rheumatology colleague.

Ergo, that shouldn't be an issue.

Incorrect. Just today discussed EDS with a Hopkins rheumatologist who indicated that it was not her area of expertise, that it was not a rheumatologist's job to dx. While this is clearly false, the fact remains that many rheumatologists are not educated on all heritable connective tissue disorders.

On average, a consult with a geneticist will yield the most *informed* feedback, but as the most common form of EDS (III) is not subject to genetic testing, and as genetics as a field is of course excessively diverse, *and* as EDS is a syndrome and hence will manifest differently in each case, patients are frequently left to "fend for themselves" medically.

Also on average, such a realization would induce some measure of compassion from the attending physician. Perhaps one whose ears were bigger than his ego.

 

[medzeb]

I can just see the documentation of the ADLs from the disability patient.

1-Got out of bed by myself at 945AM
2-I can now play Xbox for 3 hours today by myself!
3-I can now get food from store via food stamps, house is now stocked with of cheetos, twinkies and big gulps
4-I can now get the bottle cap off my liquor bottles no problem
5-I was able to masturbate three times today without my elbow pain

"See doc, look at the improved function I achieve on Perocet!"



Seriously though, there is nothing bankrupting this country more these days than the fact 90% of the people on disability shouldn't be. Opioids are powerful and risky. If you've worked your full life up to at least early medicare retirement age (62), and need some help with ADLs fine. If you are of working age, and are trying to support yourself and or family and need help for ADLs, to work, etc, fine.

But I will never write opioids to someone I don't respect, who is a leach on our country and the tax system and is just wasting their life as I outlined above. I even tell these patients that the risk of opioids isn't worth it unless they are working full-time, so if they really need opioids, they can get a damn job (with documentation) and then come back from another visit.

Extraordinary to write such thin

 

[medzeb]

I can just see the documentation of the ADLs from the disability patient.

1-Got out of bed by myself at 945AM
2-I can now play Xbox for 3 hours today by myself!
3-I can now get food from store via food stamps, house is now stocked with of cheetos, twinkies and big gulps
4-I can now get the bottle cap off my liquor bottles no problem
5-I was able to masturbate three times today without my elbow pain

"See doc, look at the improved function I achieve on Perocet!"



Seriously though, there is nothing bankrupting this country more these days than the fact 90% of the people on disability shouldn't be. Opioids are powerful and risky. If you've worked your full life up to at least early medicare retirement age (62), and need some help with ADLs fine. If you are of working age, and are trying to support yourself and or family and need help for ADLs, to work, etc, fine.

But I will never write opioids to someone I don't respect, who is a leach on our country and the tax system and is just wasting their life as I outlined above. I even tell these patients that the risk of opioids isn't worth it unless they are working full-time, so if they really need opioids, they can get a damn job (with documentation) and then come back from another visit.

What a bunch of ignorant, cruel retorts. Good God, why did you go into medicine??

 

[101N]

It's clear that a lot of fibro patients consider EDS to be their new mystery dx. Nope, it's still fibro.

 

[Medame]

It's clear that a lot of fibro patients consider EDS to be their new mystery dx. Nope, it's still fibro.

I take it you're familiar with EDS and have evaluated each of these patients personally?

 

[Medame]

I take it you're familiar with EDS and have evaluated each of these patients personally?

I'll give you a few more minutes to google it.

 

[Kisforpotassium]

"About 1/2 the patients diagnosed with fibromyalgia actually have ehlers danlos syndrome instead, which is a multi-systemic collagen disorder. An eds diagnosis invalidates the fibro diagnosis, this patient doesn't have fibro if they have eds."

That's a bunch of nonsense.

Please read the new papers coming out from the Ehlers-Danlos society March 15th. There have been papers published by Rodney Grahame and other experts who study the disease that prove about half patients referred to rheumatology clinics meet the criteria for EDS measured by Beighton and Brighton criteria. New EDS criteria exclude those who are diagnosed with other rheumatological disorders but many patients never make it there in the first place. It also depends if you consider hypermobility syndrome and ehlers danlos hypermobility type to be the same disorder. EDS causes all symptoms of fibro but we know the cause of them. Fibro has exclusionary criteria that there can't be causes for the pain and fatigue to be diagnosed with it. I'm not sure why you think any of this is nonsense, other than you not keeping up with the literature. I work with these patients often so I try to read all articles that come out on the subject.

 

[medzeb]

30 year old female on disability with 3 kids: OXY/APAP 10/325 four QD, Mobic 15 mg, Lyrica 300 mg BID, OTC Aleve, & Seroquel QHS.

What's your next move...

View attachment 215823

30 year old female on disability with 3 kids: OXY/APAP 10/325 four QD, Mobic 15 mg, Lyrica 300 mg BID, OTC Aleve, & Seroquel QHS.

What's your next move...

View attachment 215823

As an Ehlers Danlos patient and advocate, I'm glad you're reaching out for more ideas. However, I'm throughly disgusted to see the many heartless. ignorant responses by doctors who clearly know nothing about EDS and who clearly don't care about the patient's pain. Just extraordinary. These doctors should quit or be fired, immediately.

Narcotics are part of the standard of care for EDS patients, as a last resort, and enable many of these patients to have a better quality of life. Failure to treat pain has led many EDS patients to end their own lives.

Wide spread pain is a prominent manifestation of EDS.

I'm not qualified to give medication advice but want to add that skilled physical therapy can be very helpful. I write 'skilled' because in the wrong hands, PT can worsen an EDS patient's condition. A program like the Muldowney protocol, which was specifically designed for EDS patients, has helped many. Aqua therapy is great too. Strengthening core muscles is a MUST as is myofascial release.

Vitamin deficiencies are common with EDS - low iron/ferritin caused all sorts of problems for me. I now make sure to keep my ferritin over 50 and this has helped a number of symptoms such as fatigue, a 'down' mood', abolished my RLS and even improved my pain score. Frank deficiency isn't even necessary to provoke symptoms, optimize levels for the best results. I've been getting IV iron since 2011 - total game changer. Low VitD also contributes to pain. It's too bad the role of nutrition is so overlooked.

Also, many EDS patients suffer with insomnia and sleep apnea, worth checking for as poor sleep hygeine can certainly impact pain and keep us in a vicious cycle.

Other good advice below, such as checking for Craniocervical instability etc. The role of an excellent orthopedist in invaluable asset for the EDS patient but as most are not educated on EDS, it's hard to find the right sort of help.


Going forward, I recommend reviewing:





Please don't give up on this patient. As you can see from the uncaring comments here, it's very possible you're this patient's last shred of hope.

 

[101N]

Cite your sources or leave.

 

[Medame]

After you. Those patients you eval'd?

 

[Kisforpotassium]

I take it you're familiar with EDS and have evaluated each of these patients personally?

It doesn't matter what you call it as long as you know the science behind it and treat the patients so they get better. These patients DO get better if you are doing the right things for them. If you have patients that aren't improving you should consider other avenues. Try the things I suggested in my post above and read the literature. IVIG and plasmapheresis are other treatment options, since many of these patients have anti-alpha, anti-beta and anti-ndma antibodies.

 

[101N]

You have 'EDS" right?

Where did you get your MD, and perform your fellowship?

 

[medzeb]

30 year old female on disability with 3 kids: OXY/APAP 10/325 four QD, Mobic 15 mg, Lyrica 300 mg BID, OTC Aleve, & Seroquel QHS.

What's your next move...

View attachment 215823

lol

Im sure she is "allergic" to everything but narcotics in the future.

And I bet you're allergic to empathy and compassion.

 

[medzeb]

Incorrect. Just today discussed EDS with a Hopkins rheumatologist who indicated that it was not her area of expertise, that it was not a rheumatologist's job to dx. While this is clearly false, the fact remains that many rheumatologists are not educated on all heritable connective tissue disorders.

On average, a consult with a geneticist will yield the most *informed* feedback, but as the most common form of EDS (III) is not subject to genetic testing, and as genetics as a field is of course excessively diverse, *and* as EDS is a syndrome and hence will manifest differently in each case, patients are frequently left to "fend for themselves" medically.

Also on average, such a realization would induce some measure of compassion from the attending physician. Perhaps one whose ears were bigger than his ego.

BINGO -- most rheumies are not versed in EDS and cannot or will not make the dx but they will freely and incorrectly dx fibro instead.

 

[medzeb]

Agree and disagree. Though it is clear that EDS is much more prevalent than previously assumed, I'm not aware of any studies indicating that 50/50 percentage. Furthermore, fairly certain it is possible to have both. After all, plenty of EDS patients do *not* have fibro; hence though it may sometimes--or even frequently--be *secondary* to EDS, it shouldn't be written off as nonexistent.

The underpinning of a fibro dx is that there is nothing else to explain the pain - not the case when a patient has EDS.